Taking it all in...and that volunteer announcement

Today was our meeting to go over the evaluations. It was emotional and hard. The wording is a hit that hurts so deep. The psychologist says the evaluation results put her "optimistically at a 24-36 month level." He says they gave her the benefit of the doubt on a lot of things. This momma had a really hard time hearing the things that were said. I am processing a lot of it...We have a lot of decisions to make as to what we will ask for at our meeting next Wednesday. That's really all I can say at this point...As I continue to process more, I will work on a post.

An update on the crazy PE lady. Caitlyn will no longer be joining her classes in PE. When the life skills class goes on Tuesday mornings, [my favorite para ed.] will keep her and one other student behind to work on turn taking with rolling and passing balls. They will also work on some yoga poses to help with range of motion. They are going to try and re-work her therapy schedule so that she can have speech or motor therapy while the general education Kindergarten class is in PE. We are so thankful that we wont have to deal with the PE teacher anymore!

Everything in our lives is one day at a time...

And now for the announcement. Since my business cards came in the mail today, it all feels more real. I am the new Washington State Regional Representative for the International Rett Syndrome Foundation. I'm hoping that I am far enough along on my Rett Syndrome journey to help new families just starting out on theirs. I have been stock piling my resources in the last couple of months, and going through some training sessions to make myself familiar with educational resources in our state. I hope that this journey just furthers my own understanding and acceptance on the Rett Syndrome path.

Anger and other feelings

Yesterday Caitlyn had a quick appointment at school to have her AFO's looked at. So, after that meeting I stayed until lunch so I could see what the mornings look like. I felt feelings of my daughter being cared for, feelings of anger, and finally feelings of knowing I'm doing the right thing by fighting.

First, the anger...There are some huge issues going on with the PE teacher that are very angering...She has issue with Caitlyn's hand mouthing. She makes them put her arm braces on, which in my mind makes the PE time no longer meaningful. Caitlyn can't do much in PE without bending her elbows! Caitlyn's aide informed me that during General Ed if she doesn't have her braces, the PE teacher makes her wear a sock over her hands!!! We are furious and I'm feeling as though it is border line abusive to humiliate her and restrict her in such a way! So, as soon as I received this information, I went to the Life Skills teacher. She said they have brought up the issue, but apparently hearing it from the teacher isn't enough. So, she asked me to please bring it up at our meeting on Thursday. I was actually in tears talking to the teacher. Can you believe it? A sock over my daughters hands because she can't handle the spit!

I have questioned our decisions to fight so hard at times...Just because I wasn't sure if it was my agenda I was fighting, or if it really was what is best for Caitlyn. Yesterday answered all of my questions. Mom's and Dad's you MUST get inclusion in your IEP if you expect your child receive any during the day. And being in the lunch room at the same time as typically developing children is NOT inclusion. That would be equal to putting a poster of the alphabet on the wall and say you taught it to the children! Caitlyn's class goes to recess alone, and they sit off in the corner during lunch. These are the two times that the school tried to sell me on their inclusion policy. The poor children in that room are essentially being isolated from the rest of the school...It just breaks my heart...I wish I could fight for all the other children in that classroom, too! Inclusion isn't just about academics! Children deserve the right to meet and be around their peers!

Caitlyn's off on her field trip today...I'll update what I know probably tomorrow, along with an update after our meeting.

Important meetings in the next couple of weeks.

If you remember back in September, I posted about our initial IEP meeting with the new school district. Well, our two months are coming to an end now. It's hard to believe my baby is almost 2 months into Kindergarten. I wish I could say that Caitlyn is doing wonderfully in school and that she has proven her ability to be in a general ed classroom. The truth is, it has been a very rough 2 months. I don't think it is in any way a true portrayal of Caitlyn's true abilities. It is frustrating and exhausting. She loves being in school, and the other kids love having her there. BOTH of her teachers are amazing. I know in my heart that my reasons for wanting her in a general education classroom has nothing to do with me doubting her true abilities. I know this, but at the same time I find myself wondering what is really best for her. I want her to have relationships and be accepted by the other kids, but I also want her to have a successful academic foundation. I am finding that the other kids can't help but be accepting to Caitlyn. I had a mom tell me that her daughter loves being able to sit next to Caitlyn! Caitlyn gets to go with her general education class to the pumpkin farm on Wednesday! She is going to have a blast, I'm sure...but mommy is terrified!

Back to those important meetings. Thursday October 30th, we will meet with the team to go over the results of the recent evaluations. This has me a little down. I try to keep in mind that the effects of Rett Syndrome on Caitlyn leave her unable to preform on a standard evaluation. She did relatively well. I was allowed to be there and help out with the evals, and for that I am grateful. We showed them how we sing "Old McDonald Had a Farm." Those that have seen Susan Norwell may find this familiar. Caitlyn picks the animal we sing about, and mommy sings. If Caitlyn looks away, I stop singing. She knows that if she looks back to me, I'll continue singing. She giggles and points at the animal the whole time. I think the eval team really enjoyed seeing that! The eval was hard for me. I have no doubt that Caitlyn knew a lot of what they were asking her to do, I think it was just too hard to make her body do it! My heart hurts for her, but she is such a good sport about it, and doesn't seem to be bothered! I know that Caitlyn is not at a 5yr old level developmentally. I am hoping to hear her put at atleast a 3 yr old level in one or more areas. If nothing else, it will show a developmental progression since diagnosis! Keep these numbers in mind, until I come back to update after that meeting. At 18 months, Caitlyn's receptive and expressive language evaluations placed her at a 9-10 month level. Please pray for our strength while we receive the results of her evaluations at 5 yrs.

On November 5th, we will go in again for the official IEP meeting to discuss permanent placement for the remainder of the year, as well as fine tuning her IEP goals. I want Caitlyn to be successful...That is ultimately my goal. I want whatever comes out of that meeting to full reflect the needs and abilities of Caitlyn. I will be sure to update everyone after this meeting!

Last month our family became victim to the economic downfall when Eric was layed off from his job. He is still without work, and looking hard. In the mean time, I have gone back to work. I am an Assistant Site Director for a before and after school YMCA program. I am really hoping that this will lead to a full time Site Director position in the near future! After one week, I am enjoying my position. I have also taken on a volunteer position, which you will have to wait to hear about!

I sent Eric to the store for batteries, so be on the look out for pictures in the near future!

Pure Joy at the Park

Caitlyn and I went to the park yesterday, and I am kicking myself that I went without a camera! Her favorite activity has always been the swings. After outgrowing the baby seats, the park wasn't the same for her. She couldn't enjoy her favorite activity, because she couldn't hold on and stay seated. Well, the park closest to our house now has an adaptive swing! We watched from afar as other children climbed into it on there own and used it. This little boy was in it for awhile, and when another swing opened up I went up the parents and said "Excuse me, but would you be willing to move to another swing? This is the only swing my daughter can physically use." They were more than willing, and Caitlyn giggled and laughed as she swung through the air without having to worry about falling! She was soooo excited! I was so happy for her, and it took all I had to not break down crying as my daughter can swing again at the park! I promise the next trip to the park will include a camera! The life in her little face....it would have you in tears too..Tears of joy!

"Your Daughter Threw Up"

I just spent the last three days in some training (I'll post more about that later). Tuesday morning I called the school to inform them that I would be in meetings for the next three days, and to please call Eric if they need anything. So, we are finishing up the morning session (at which we were presenting our knowledge from the prior two days) and my pocket is vibrating. So I peak to see who it is. I recognize the number as being school. I admit I ignored the call, but in my defense I sent a very lengthy email to Caitlyn's teacher last night (also worthy of its own post), and I thought it might have something to do with that. So I check the message when we finish up, and it is the school nurse calling to say Caitlyn "threw up quite a large amount." So I call back, and talk to someone in the health center, who tells me "yes Caitlyn threw up, and can I come pick her up?" Now, Eric and I are not the type of parents who will ignore her being sick. If she is truly sick, I'd go get her! But I was suspicious, because a couple weeks ago a similar thing happened, and I get there to get her, and her teacher said "yeah she had her hands in her mouth and stuck it back pretty far, but that's never bothered her before!" ARE YOU KIDDING ME? They called me to come get her because she gagged herself! Anyway, so I wanted to know the story...I got the story...no she didn't gag, she had her arm braces on at the time...I said, "Ok, I'm in meetings all day, I'll call her dad to go get her." Well, Eric isn't feeling well and was still in bed, which is why he hadn't heard them call! So he goes to the school. He said when he arrived and saw Caitlyn dancing around in the lobby, he had to hear the story....He got three different stories from people, but the ultimate truth came from that aide that had been with her at the time. It turns out she had just eaten some cheerios, and started getting upset. Then she burped some and SPIT UP!!! They called me to come get my child because she swallowed too much air and spit up! Eric, bless his heart, told them it is common, it wont be the last time, blah blah blah...What a pain!!! Anyway, that's my story for the day. Speaking of Caitlyn, I need to go wake her from her nap...Every once and awhile she just really needs to crash after school, and today was one of those days!

Caitlyn isn't disabled!

Well, atleast according the Washington State Department of Developmental Disabilities. It appears that there is an important piece of paper missing from Caitlyn's school file showing that she has developmental delays. I guess it isn't enough just to talk to someone and hear that she is receiving services, and does have nearly global delays...Or enough to contact her SSI caseworker and find she qualifies for their services...Nope, for now Caitlyn doesn't have a diagnosis or disability that qualifies her for services...Maybe they should come visit my home? What a joke...I just want some medicaid personal care hours so I can get a break! grrrr...Stay tuned, I'll let you all know if they decide she is indeed disabled...

Just a picture to start off the week

Wouldn't you like to start off your week with a picture? My sister took this picture over the summer. I think it was during one of our "bangs or no bangs" stages...We were on a train ride through the super fun Country Village. One of those fun typical outings! I don't know what the week will provide as far as posts...Caitlyn is having a speech evaluation on Thursday, so I will atleast post after that. Maybe I'll even have more pictures! I really hope the eval goes smoothly...Now is the time for her smarty pants attitude to shine!

Just wondering...Do you find that other girls with Rett Syndrome have deceiving cheeks? With the chubbiness of her cheeks, people don't see how skinny she really is!

The Good Side of a Monster

When a life altering even happens, such as finding out your child has Rett Syndrome, it can be somewhat hard to find the good in it. Had I been asked 2 years ago to name 10 positive things about Rett Syndrome and my daughter, I would have laughed. In my mind, at the time, there was no good. It isn't just about finding the good in a sad event...It's about finding the good in a monster...and it is there...

The GOOD Things About Rett Syndrome (in no particular order)

1. It is a diagnosis. There are many families out there that are still on the road to find a diagnosis for their child. A friend of mine would respond to people saying "My son has GOK syndrome." (God Only Knows). As much as finding out your child has Rett Syndrome hurts, imagine how much more it would hurt if you were still trying to find an answer. It closes a chapter of the unknown.

2. You learn to celebrate the little things. We clap and cheer just for a little tinkle in the toilet. Sure, all parents get excited when their children become potty trained...But we cheer for each time they go, and they may be 5 before they go the first time! We celebrate food making it into their mouths, even if it will never happen again. We celebrate the little attempts at communication.

3. You learn the true meaning of unconditional love. You will never hear your child say "I hate you!" As they run out of the room. They depend on you for every aspect of their life, and are so in love with you. You can see it in their eyes. That is a love that will NEVER go away!!

4. You develop a compassion for people that isn't anything learned in a book. I admit there was a time when I would feel such pity for people with children who were disabled. It just broke my heart! Yes, it still breaks my heart, but their is no more pity. Now, I see the strength in everything that parents do. I secretly praise them for having the strength to go out. I appreciate people more than I ever have before.

5. You meet the most amazing friends. The Rett Syndrome community is so close knit. We lean on each other in the good times and the bad. We may only see each other once or twice a year, unless we live close. The friendships are lifetime. Tragedy brought us together, but hope and joy keeps us together. Interests change, and your other friends may drift away. The friends I have made as a result of Caitlyn having Rett Syndrome are the most cherished friends I have. We follow each other's girls like they are our own. We help each other keep it together. (Gals, you know who you are.) It isn't just the moms...The Grammy's become our friends to. They follow our girls and love them.

6. You become an expert. Sure, I could go to school and become a doctor, but why spend that amount of time in school, when I already know more than some doctors. I am an expert in the subject of Rett Syndrome. The thing about that is, I can also accept that things are changing, and there is always more to learn.

I can find the good in Rett Syndrome, but that in no way means I like it. It has had some positive effects on my life. It has taught me to slow down. It has showed me appreciate every step I take. I have learned that at the end of the day, when I am exhausted and tired, I know that I did everything I could for that day. I learned not to think about yesterday (unless it involves not having a bm) or tomorrow. I live in the now. I live one day at a time. I have the privilege and responsibility to not only be a caretaker, but also be a voice. We are our children's voice. They have the best advocates they could want.

Rett Syndrome has brought out a side of me that I didn't know exited. It has brought out a leadership side of me that I am learning to embrace. Through my own experiences, I am learning to give other parents the power. Rett Syndrome has changed my life for the better.



I have a lot of ideas running through my head for topics throughout the month. My husband has agreed to do a piece at some point, giving everyone a father's perspective on Rett Syndrome. This should be a great month of reflections on Rett Syndrome and our lives. I am opening up to my readers, and if there are any questions or topics you would like me to reflect on, please let me know.

October is Rett Syndrome Awareness Month!!!

Welcome to the first installment in the Rett Syndrome serious 2008. Do you know our story? A quick recap: Caitlyn was born on August 5, 2003 at 10:20pm. She weighed 7lbs .02 ounces. (exact weights...) She was a beautiful baby girl with a head full of dark curly hair. Two days later we took her home. Everything proceeded normally, or so we thought. We look back now and see things that are now considered red flags. Caitlyn was a very quiet baby. She didn't even cry when she was hungry! We had no clue that this was a sign of things to come. Caitlyn's large motor skills developed slowly, but wasn't a huge concern. She started walking at 18 months, but was pretty unsteady and had lost the 5 words she once had. We first heard the words Rett Syndrome on December 3rd, 2005. The doctors were testing her to rule out the Syndrome. We had no clue that 6 weeks later we would be sitting in that same office hearing that our baby did indeed have Rett Syndrome.

So that is a brief overview of our story. You might ask "What is Rett Syndrome?"

Rett Syndrome (RS) is a neurological disorder often misdiagnosed as autism, cerebral palsy or non-specified developmental delay caused by a defective regulatory MECP2 gene, found on the X chromosome seen almost exclusively in females. Unlike females, who have two X-chromosomes, males have an X and a Y chromosome. Because males lack a "backup" copy of the X chromosome that can compensate for a defective one, mutations in MECP2 are lethal to the male fetus. This is why RS is found overwhelmingly in females. Rett Syndrome occurs in a variety of racial and ethnic groups worldwide now known to occur from 1:10,000 to 1:23,000 female births, but incidence may be far greater as new genetic evidence is discovered.

Development appears normal until 6-18 months of age followed by loss of acquired speech and hand skills, slowing of head growth and development of stereotyped repetitive hand movements, loss or difficulty with mobility hand movements include handwashing, hand wringing, hand tapping, hand clapping and hand mouthing. Stereotyped hand movements may change over time and additional problems may include seizures, breathing irregularities (hyperventilation and apnea), teeth grinding and curvature of the spine (scoliosis). 99.5 % of cases of RS occur only once in a family. Barring illness or complications, survival into adulthood is expected.

This month I will be doing a series on Rett Sydrome and our family. Join as I share our most deep and private struggles with this devastating syndrome. I will also share the happy moments, and the positive effects Rett Syndrome has had on our lives. If you find yourself asking "what can I do to help?" stay tuned.

Are you ready for October? I am!!!

I am running my post through my head, and I may not have it ready tomorrow, but it's coming together! I'm sure I'll post more than one throughout the month, but for my first post I have decided to challenge myself. Before the end of the week I will post my third post for Rett Syndrome Awareness month...I am challenging myself to post about the POSITIVE influence Rett Syndrome has had on our lives. We constantly see the grim side of the diagnosis, and I know the positive takes more time to see, but it is there. Would you like to join me?

I hate Rett Syndrome--kind of deep, grab a tissue!

Let's face it, each and every one of us parents go through this from time to time. You think it's all going great, and you're dealing with stuff one day at a time...Then, all of the sudden it strikes. Something happens that digs up all of those feelings in you. All of those feelings that make you angry, that make you feel like you have failed your daughter, that make you wonder if you've done everything you can...Does it ever get easier? Sure it does! The "I hate Rett Syndrome" moments become fewer and farther between. It gets easier to pull through, but still they happen. All we can do is lean on each other and remember that we are all in this together. Although Rett Syndrome takes us all on separate journey's, it is still Rett Syndrome. It is still a change in our lives that we never expected.

Just when you think you've got it all under control, something happens and you lose it...That pretty much describes my day. Since Caitlyn is in Kindergarten now, she is bringing home the occasional homework. We had two things we had to do today. The first was decorating a box that would hold all of the books they are making at school, so that she can read them at home. This should have been a simple project, but it tore open old wounds. We have these cool pen adapters (I'll post a picture soon) that Eric made for Caitlyn so that she can't throw the markers. She has one at school, and one at home. So we went to the craft store and bought a cute box and some stickers. We sat down after a short nap to decorate our box...It ended up with her running off laughing and me crying. It was such a simple task...But sometimes it is the simplest of things that remind you of what you thought life would be like. I never in a million years thought the simple project of decorating a box would hurt so bad. I can't explain the pain...It hurts to see her not be able to do simple tasks. My logical thinking knows that it shouldn't hurt. I know she knows know different, and doesn't seem frustrated...but the pain persists. We did finish our box...I decided not to venture into the Jack and Jill assignment, thinking we would do that in the morning. (We have to count the words in each line, marking them on a little graph)

With everyone one of these feelings, questions come up in my mind. Today I find myself wondering...In those moments that the tears escape before I can be alone, what do I tell Caitlyn? How do I explain the pain I feel to her?

With every tough day, comes a good ending. On the hard days, I strive to make the ending enjoyable for both of us. Caitlyn had a very enjoyable bath, which left us both soaked. We then read the book that she brought home from the school library on Friday, by flashlight. She loved it! We curled up in her bed together, she turned the pages and I read the words. She was so excited to turn the pages and see what happened next. It is hard, but we try to find a drop of joy in everyday...

I feel like Caitlyn was just diagnosed with Rett Syndrome yesterday...

Life Goes On...Did you grow up with it to?

Many of us in my age range and older remember the days of family TV programing on Sunday nights. There are two shows I really remember. First it was Life Goes On. This show starred Chris Burke as Corky. Did you spend your Sunday evenings with the Thacher family? Today I dream of my daughter having a sister like Becca Thacher. (the other family show on Sunday nights when I was growing up was Touched By an Angel)

Anyway, the reason I am bringing you all down memory lane is because tomorrow I am leaving to go over to Yakima with 4 other moms of children with special needs. We are going to attend the Valued Lives Conference. Tomorrow night I will have the opportunity to hear Chris Burke speak. I'm thrilled to have this chance. I will be sure to fill everyone in on my experience after I get home on Friday.

This is just the first of some exciting opportunities I have in the next couple of months. Next month I will be attending a KIT training (KIT-Kids Included Together). This training will train me so that I can train others on KIT. This is so exciting for me to take part it these trainings. I look forward to a day when our children can go to the same fun kid places and not be turned away. A day when parents wont have to worry about what they are going to do with their children when they are forced to get a job...There will come a day when all childcare providers will be trained on including all kids together in their centers. Dream with me, and let's make the step to make a difference!

To All Blogging Rett Parents

Rett Parents:

As we all know, October is Rett Syndrome Awareness Month. It is right around the corner. My suggestion is that we all post on the same topic for our Awareness post. Our first October I did a quite long post on our journey to learning about Rett Syndrome, and what it has meant in our life. That was a little more than 6 months after our diagnosis. Last year I did a shorter post talking about what year 2 brought us in our journey. If other Rett blogger's would like to partake in a post topic for our Awareness posts, please leave a comment with any suggestions you might have, then we can have a vote. Imagine how therapeutic it would be for newly diagnosed families, or families who have their diagnosis for years to be able to spend some time reading several different views on one Rett related topic.


Also, if you are a regular reader of my blog, or just stopping by, and you would like your child's blog listed on my list, please leave a comment and let me know.

Lastly, it is a long time away, but let's start thinking about the IRSF conference 2009. If you think you might be attending, let us know! I will most likely be arriving on Thursday so that I can enjoy a little bit of time before the conference starts. (if nothing else, that's what I learned from Chicago. Spending that money to go, I need to arrive early or stay late so that I can enjoy some vacation!) Maybe we can plan a Rett Syndrome blogger get together at some point.

Take care everyone!

another update

I first want to apologize to those looking for pictures...I will work on that some this week.

Where to start...School first, I guess. Caitlyn's second week of school went much better than her first. She is getting the hang of things. She loves going to school. I drove her on Tuesday last week, and it was so cute! Her Kindergarten classroom is right next door to her life skills classroom. When we show up in the morning, she tries to break away and go into the K class. She knows that is where she enjoys being the most. We decided to try letting her buy lunch, thinking it would save some time and let her have more of a variety. There is a lot of choices, so we'll get to the point of letting her choose what she wants each day.

Tuesday night was curriculum night. Eric and I seem to be on the young side of K parents in her class. We enjoyed the evening. We had the opportunity to speak with her K teacher for a couple minutes. Turns out no one thought to tell her that Caitlyn's placement was only until the end of October. This is huge for us because she really seems to enjoy having Caitlyn in the class. The other kids are really warming up to her. It's great to hear about!

On the Benecalorie front, we are doing ok. We don't know yet if she is gaining, but we are able to get one container in her each day. We mix it in her propel flavored water, oatmeal, mac and cheese, pudding. I also put it in her scrambled egg mixture, or in the mixture of french toast. She is handling it pretty good. It does make her a little less constipated, but all of you other Rett parent's know that's not a bad thing! The real test will be if it is putting on any pounds...I struggle with this decision. I know she is healthy, but I also know that she is too skinny. What I struggle with is what do I do when she gains 5 pounds? Will I still be able to take care of her as easy? Will it get too hard if she gains?

Caitlyn had a great eye doctor appointment on Monday. She will be getting glasses, but first we have to find a place that will take our insurance for frames. Hopefully it will improve things over all for her.

I promise next time I post I will try and get some pictures up...

We're BACK!!!!

Today finishes off Caitlyn's first week of Kindergarten. She has about 7 more weeks of "proving" herself to go. The week started off strong, followed by two not so strong days. Caitlyn wasn't getting enough sleep at night! She was waking early. Wednesday night she was asleep by 6:15 and woke up about 7:15 am! We were sure this would help! She is still struggling with what they say is being tired. She gets pulled from her Kindergarten class to take walks and calm down. We are suspicious that there is more frusteration that being tired. Yesterday was a better day, but still rough...We are hoping she will finish off the week with a bang! We are trying to teach her staff to read her ques, and head off the melt downs before they start. I am discouraged, but keep telling myself that it is only the end of the first week. Being away from home for 7 hours a day (counting bus time) is a lot to get used to. (for mommy too.) In feeling discouraged, I sometimes find myself wondering if we are doing the right thing...

In other news, starting Monday we will be using Benecalorie. Here is the description: There are two reasons why BENECALORIE® is the ultimate solution for fighting fatigue; a formula that packs 7 grams of high-quality protein and 330 calories into a single 1.5-oz serving, and its ability to blend easily into liquids and most foods. Maximum nutrition, maximum flexibility, maximum variety, with a minimum serving size.

We got this as a prescription from our doctor, so it is being payed for by our insurance! We can mix it in Caitlyn's food and drinks throughout the day. That's an extra 330 calories a day! I know Caitlyn isn't all that small at first sight, but her weight for hight puts her right at or just below the 5th percent. We are being proactive and trying to avoid the possibilities of weight loss if Caitlyn gets sick this winter! I'll let everyone know how it goes, but I encourage you to check out this product!

Caitlyn has an eye doctor appointment on the 15th, and then we have another meeting on Thursday at the schools to discuss assessment. I promise to update soon, and also get a picture up!

You Win some You Lose some...we sorta won

I'm sure everyone is sitting on the edge of their seats waiting to see how it went.....Caitlyn will attend the Life Skills classroom in the morning, and then attend a General Ed pm Kindergarten class with an aide. She will do this until the end of October while they observe her and we do assessments. Then we will meet again. I'm really hoping she shows her stuff in the next 2 months...

What an emotional proccess. It took us 3 hours to get to this...It was 2 1/2 before they even offered it! A piece of advice to all of those out there...When writing IEP goals, think of things that can only be met in a general ed environment. And make sure every conversation you have with teachers are in writing!!! We are happy with this for now. Caitlyn and I will go meet her teachers tomorrow morning, then she will start school on Monday. We faught for her...and we won this round...Now on to round 2...Thanks for everyone's support...it means the world!

We are ready...please pray for us on Thursday

Thursday September 4th, Eric, my mom (our note taker) and Linda (Caitlyn's childcare provider and our advocate) will join me in being Caitlyn's voice for our IEP meeting. We hope for a smooth successful process, that ends in Caitlyn's best interests being served. I will update everyone after that meeting to give you all an update. We could really use everyone's thoughts...The meeting is at 8:30 am. Thankyou.

Life Skills...

If you have a child with special needs, you understand the pain of these two words. We will fight with all we have...If we can not get an IEP appointment on Sept 2, Caitlyn will not be starting the school year. I made it very clear today that I will not be sending her into a life skills program. I will not give up on my daughter. Do you have any idea how much doubt the school district will try and put in your head? I am so sure about what we are doing, but I still got off the phone and was in tears. I felt like I was some how letting my daughter down. Why do I let them get to me...I feel so defeated. But we will stay strong.

I am still without internet at home...Hopefully soon! I'm wondering if anyone would like to have a blog set up so we can all share calorie boosting ideas? I'm willing to set something up in my free time if anyone is interested!

Thank you everyone for your support.

We Haven't Completely Gone Away

Just a quick update for all of our regular readers. We are without Internet at home for another couple of weeks as we work through some things. I try to get the free WiFi around town when I have time alone. Caitlyn celebrated her 5th birthday last Tuesday. We haven't had a party yet, because I want to be able to invite friends from school. She had her well child check on Friday and is 3 feet 10 1/2 inches!!! She gained 1 1/2 lbs, and is at 39 now, but we can't really count it since she grew 2 1/2 inches!! We have put the weight issue on watch for now, but not really doing a lot of different stuff...Just crossing our fingers that she doesn't get sick! That's it for now!

Last Day...

Today is the last day of Caitlyn's summer program. (actually it is tomorrow, but we are headed out early in the morning to go to our local Rett Syndrome conference.) She seems to have enjoyed her bus rides, and her time there. Do I think it made any difference in the over all scheme of things? No, not really. Would I do it again next summer? I'm not sure. One things is for sure, we were blessed with a wonderful teacher for the summer! And, it gave me a first impression of the school district, but we wont go there. Now, time to plan some fun activities. We have a month until school starts up again. I want to make it fun, but know that I will be pre-occupied with meetings and making arrangements for the fall.

Today is also my last day as Children's Program Lead at my job. I will work the next two Wednesday's and then I'm done, except for the occasional subbing. It is a little bitter sweet. I love the feeling working for a non-profit gives you. I have really enjoyed my time there, and it is hard to leave. But, I will no longer have to wonder where the money will come from for Caitlyn's medication. We are excited to get Caitlyn set up in some therapies outside of school. We also have Well Child Check scheduled for the 8th of August because my baby is going to be 5 on Tuesday! And we have a eye doctor appointment for September 15th. (We are also very excited about having our pull ups payed for again!) So, has I say goodbye to my job, I am saying hello to all of the doors that are once again opening for Caitlyn. Stay tuned as I fill you in on all of the exciting volunteer work I will be doing in the future!